FASS - Presentation and discussion of Good Practice Example: MaliniakNowgen
"FASS - Presentation and discussion of Good Practice Example", presented by Ann Maliniak, Swedish Association of the Pharmaceutical Industry (LIF), Sweden, at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
Reaching a public audience on medicines development: Anna ZawadaNowgen
"Reaching a public audience on medicines development", presented by Anna Zawada, Agency for Health Technology Assessment at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
What were the success factors in this morning good practices examples, what a...Nowgen
"What were the success factors in this morning good practices examples", Results from Workgroup 2 presented by at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
Workshop 4 - Research
"Presentation of the RD Platform fact finding study
on the trends and determinants of rare disease research"
Virginie Hivert, Orphanet, France
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI
"Patient involvement in medicines R&D: Bringing to life with EUPATI", presented by Jan Geissler, EUPATI Director, at the EUPATI 2013 Conference on 19 April 2013
FASS - Presentation and discussion of Good Practice Example: MaliniakNowgen
"FASS - Presentation and discussion of Good Practice Example", presented by Ann Maliniak, Swedish Association of the Pharmaceutical Industry (LIF), Sweden, at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
Reaching a public audience on medicines development: Anna ZawadaNowgen
"Reaching a public audience on medicines development", presented by Anna Zawada, Agency for Health Technology Assessment at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
What were the success factors in this morning good practices examples, what a...Nowgen
"What were the success factors in this morning good practices examples", Results from Workgroup 2 presented by at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
Workshop 4 - Research
"Presentation of the RD Platform fact finding study
on the trends and determinants of rare disease research"
Virginie Hivert, Orphanet, France
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI
"Patient involvement in medicines R&D: Bringing to life with EUPATI", presented by Jan Geissler, EUPATI Director, at the EUPATI 2013 Conference on 19 April 2013
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
"Patient involvement in medicines R&D: Here we are, and where we want to be in 2020" by Nicola Bedlington, Executive Director of European Patients' Forum and Coordinator of the EUPATI project, at the EUPATI 2013 Conference on 19 April 2013.
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involvement in Medicines R&D, “Bring to life with EUPATI examples”, by Niels Westergaard, PhD, DSc Biopeople, University of Copenhagen, Denmark
Workshop 3 - Registries
"Outcome of the RD Task Force and EPPOSI Workshop"
on registries, Tsveta Schyns, ENRAH
Eurordis Membership Meeting 2011 Amsterdam
13 – 14 May 2011
Tsveta Schyns
Workshop 7 - Brainstorming & Policy Development session: Prevention
"EUROCAT Study on Prevention of Congenital Anomalies"
Dr. Domenica Taruscio, ISS Italy
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
"Patient involvement in medicines R&D: Here we are, and where we want to be in 2020" by Nicola Bedlington, Executive Director of European Patients' Forum and Coordinator of the EUPATI project, at the EUPATI 2013 Conference on 19 April 2013.
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involvement in Medicines R&D, “Bring to life with EUPATI examples”, by Niels Westergaard, PhD, DSc Biopeople, University of Copenhagen, Denmark
Workshop 3 - Registries
"Outcome of the RD Task Force and EPPOSI Workshop"
on registries, Tsveta Schyns, ENRAH
Eurordis Membership Meeting 2011 Amsterdam
13 – 14 May 2011
Tsveta Schyns
Workshop 7 - Brainstorming & Policy Development session: Prevention
"EUROCAT Study on Prevention of Congenital Anomalies"
Dr. Domenica Taruscio, ISS Italy
Karunkara-Keynote-msf and open data-nfdp2013DataDryad
Keynote given by Unni Karunkara on Médecins Sans Frontières and open data given to the Now and Future of Data Publishing Symposium, 22 May 2013, Oxford, UK
"The patient experience in the development and implementation of National Plans for Rare Diseases in France"
Christel Nourissier
EURORDIS General Secretary
& Member of the EU Comittee of Experts on Rare Diseases
EUROPLAN advisor
Highlights from Rare Disease Day 2011 which took place on Feb 28. An international awareness day coordinated at the international level by EURORDIS (Rare Diseases Europe)
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
WHO-RDI Global Rare Disease Network - Matt Bolz-Johnson, EURORDIS
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017ipposi
Medical students taking the elective course in rare diseases are provided a number of patient perspectives throughout the module. This is what IPPOSI presented in 2017.
The International Alliance of Dermatology Patient Organizations (IADPO) is a non-profit organization made up of skin patient associations from around the world.
IADPO works with skin patient associations so that their campaigns for improved medical care, greater public understanding and increased research will improve the lives of people who live with skin disease and reach a wider audience.
I will discuss the formation and subsequent growth of IRDiRC into an organization with nearly 40 public and private funder members who have collectively pledged over 1 billion euros for rare disease research. I will also present the goals of IRDiRC, the plan that has been developed to achieve them, and the progress that has been made thus far. Finally, I will explore how additional organizations can take part in this international collaborative effort
EUPATI Status Update at EMA PCWP Meeting, 26 Nov 2015jangeissler
Overview and Status Quo of the European Patients Academy (EUPATI) project, presented by EUPATI Director Jan Geissler at the EMA Patient and Consumer Working Party (PCWP) meeting in London on 26 Nov 2015
Webinar: EUPATI Update to participants of the EUPATI Focus Groups - 4 Nov 2013EUPATI
Webinar of the European Patients' Academy on Therapeutic Innovation (EUPATI) held on 4 Nov 2013 to update participants of its focus groups about project progress, results of the qualitative research, and how the recommendations translate into content production and dissemination activities of the project.
Involving People: Patients, Participants & Consumers in U.K.Cancer Research (...Nowgen
Involving People: Patients, Participants & Consumers in U.K.Cancer Research, presented by Richard Stephens at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Working with young people to shape research – reaping the benefits & the impo...Nowgen
"Working with young people to shape research – reaping the benefits & the importance of education in this setting", presented by Jenny Preston, Medicines for Children Research Network, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
INVOLVE perspectives on learning and development (Sarah Buckland, INVOLVE)Nowgen
"INVOLVE perspectives on learning and development", presented by Sarah Buckland, INVOLVE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patients at the core of medical research & development (Emma Law, Scottish De...Nowgen
"Patients at the core of medical research & development", presented by Emma Law, Scottish Dementia Clinical Research Network, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Bringing the patient voice into GSK for educational, awareness and patient ce...Nowgen
"Bringing the patient voice into GlaxoSmithKline for educational, awareness and patient centred decisions within medicine development", presented by Kay Warner, Global Manager, Focus on the Patient, GlaxoSmithKline, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Patient involvement in medicines development – the views of patients and key ...Nowgen
"EUPATI – EU: An overview", held by Bella Starling & Suzanne Parsons (EUPATI / Nowgen) at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
Health Education on prevention of hypertensionRadhika kulvi
Hypertension is a chronic condition of concern due to its role in the causation of coronary heart diseases. Hypertension is a worldwide epidemic and important risk factor for coronary artery disease, stroke and renal diseases. Blood pressure is the force exerted by the blood against the walls of the blood vessels and is sufficient to maintain tissue perfusion during activity and rest. Hypertension is sustained elevation of BP. In adults, HTN exists when systolic blood pressure is equal to or greater than 140mmHg or diastolic BP is equal to or greater than 90mmHg. The
CHAPTER 1 SEMESTER V - ROLE OF PEADIATRIC NURSE.pdfSachin Sharma
Pediatric nurses play a vital role in the health and well-being of children. Their responsibilities are wide-ranging, and their objectives can be categorized into several key areas:
1. Direct Patient Care:
Objective: Provide comprehensive and compassionate care to infants, children, and adolescents in various healthcare settings (hospitals, clinics, etc.).
This includes tasks like:
Monitoring vital signs and physical condition.
Administering medications and treatments.
Performing procedures as directed by doctors.
Assisting with daily living activities (bathing, feeding).
Providing emotional support and pain management.
2. Health Promotion and Education:
Objective: Promote healthy behaviors and educate children, families, and communities about preventive healthcare.
This includes tasks like:
Administering vaccinations.
Providing education on nutrition, hygiene, and development.
Offering breastfeeding and childbirth support.
Counseling families on safety and injury prevention.
3. Collaboration and Advocacy:
Objective: Collaborate effectively with doctors, social workers, therapists, and other healthcare professionals to ensure coordinated care for children.
Objective: Advocate for the rights and best interests of their patients, especially when children cannot speak for themselves.
This includes tasks like:
Communicating effectively with healthcare teams.
Identifying and addressing potential risks to child welfare.
Educating families about their child's condition and treatment options.
4. Professional Development and Research:
Objective: Stay up-to-date on the latest advancements in pediatric healthcare through continuing education and research.
Objective: Contribute to improving the quality of care for children by participating in research initiatives.
This includes tasks like:
Attending workshops and conferences on pediatric nursing.
Participating in clinical trials related to child health.
Implementing evidence-based practices into their daily routines.
By fulfilling these objectives, pediatric nurses play a crucial role in ensuring the optimal health and well-being of children throughout all stages of their development.
How many patients does case series should have In comparison to case reports.pdfpubrica101
Pubrica’s team of researchers and writers create scientific and medical research articles, which may be important resources for authors and practitioners. Pubrica medical writers assist you in creating and revising the introduction by alerting the reader to gaps in the chosen study subject. Our professionals understand the order in which the hypothesis topic is followed by the broad subject, the issue, and the backdrop.
https://pubrica.com/academy/case-study-or-series/how-many-patients-does-case-series-should-have-in-comparison-to-case-reports/
Empowering ACOs: Leveraging Quality Management Tools for MIPS and BeyondHealth Catalyst
Join us as we delve into the crucial realm of quality reporting for MSSP (Medicare Shared Savings Program) Accountable Care Organizations (ACOs).
In this session, we will explore how a robust quality management solution can empower your organization to meet regulatory requirements and improve processes for MIPS reporting and internal quality programs. Learn how our MeasureAble application enables compliance and fosters continuous improvement.
Navigating Challenges: Mental Health, Legislation, and the Prison System in B...Guillermo Rivera
This conference will delve into the intricate intersections between mental health, legal frameworks, and the prison system in Bolivia. It aims to provide a comprehensive overview of the current challenges faced by mental health professionals working within the legislative and correctional landscapes. Topics of discussion will include the prevalence and impact of mental health issues among the incarcerated population, the effectiveness of existing mental health policies and legislation, and potential reforms to enhance the mental health support system within prisons.
Medical Technology Tackles New Health Care Demand - Research Report - March 2...pchutichetpong
M Capital Group (“MCG”) predicts that with, against, despite, and even without the global pandemic, the medical technology (MedTech) industry shows signs of continuous healthy growth, driven by smaller, faster, and cheaper devices, growing demand for home-based applications, technological innovation, strategic acquisitions, investments, and SPAC listings. MCG predicts that this should reflects itself in annual growth of over 6%, well beyond 2028.
According to Chris Mouchabhani, Managing Partner at M Capital Group, “Despite all economic scenarios that one may consider, beyond overall economic shocks, medical technology should remain one of the most promising and robust sectors over the short to medium term and well beyond 2028.”
There is a movement towards home-based care for the elderly, next generation scanning and MRI devices, wearable technology, artificial intelligence incorporation, and online connectivity. Experts also see a focus on predictive, preventive, personalized, participatory, and precision medicine, with rising levels of integration of home care and technological innovation.
The average cost of treatment has been rising across the board, creating additional financial burdens to governments, healthcare providers and insurance companies. According to MCG, cost-per-inpatient-stay in the United States alone rose on average annually by over 13% between 2014 to 2021, leading MedTech to focus research efforts on optimized medical equipment at lower price points, whilst emphasizing portability and ease of use. Namely, 46% of the 1,008 medical technology companies in the 2021 MedTech Innovator (“MTI”) database are focusing on prevention, wellness, detection, or diagnosis, signaling a clear push for preventive care to also tackle costs.
In addition, there has also been a lasting impact on consumer and medical demand for home care, supported by the pandemic. Lockdowns, closure of care facilities, and healthcare systems subjected to capacity pressure, accelerated demand away from traditional inpatient care. Now, outpatient care solutions are driving industry production, with nearly 70% of recent diagnostics start-up companies producing products in areas such as ambulatory clinics, at-home care, and self-administered diagnostics.
Telehealth Psychology Building Trust with Clients.pptxThe Harvest Clinic
Telehealth psychology is a digital approach that offers psychological services and mental health care to clients remotely, using technologies like video conferencing, phone calls, text messaging, and mobile apps for communication.
Deep Leg Vein Thrombosis (DVT): Meaning, Causes, Symptoms, Treatment, and Mor...The Lifesciences Magazine
Deep Leg Vein Thrombosis occurs when a blood clot forms in one or more of the deep veins in the legs. These clots can impede blood flow, leading to severe complications.
Rare Disease Day: Discussion of a good practice example: Mavris
1. Maria Mavris
European Rare Diseases Organisation (EURORDIS), France
EUPATI 2014 Workshop, 2 April 2014, Warsaw
Break-Out Group
Presentation and discussion of Good Practice Example:
EURORDIS
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
3. eurordis.org
EURORDIS
3
An international non-profit, non-governmental umbrella
rare disease patients’ organisation representing an
estimated 30 million individuals in Europe
Our Mission:
• To build a strong pan-European community of patient
organisations and people living with rare diseases
• To be their voice at the European level
• To directly or indirectly fight against the impact of rare
diseases on their lives
4. eurordis.org
EURORDIS in brief
4
• Founded in 1997
• +600 member patient organisations
• 56 countries (26 EU countries)
• 33 National Alliances of RD Patients Organisations
• 40 European Federations
• Outreach to over 1800 patient groups
• Over 4,000 rare diseases represented
• 27 staff members, offices in Paris, Brussels, Barcelona
• Approximately 130 volunteers
6. eurordis.org
Where did it begin?
• A day to put Rare Diseases in the
spotlight – build awareness
• Conceived in 2006 at a
EURORDIS meeting with the
Council of National Alliances
• Executed by the Council of
National Alliances and
coordinated by EURORDIS
internationally
• Last day of February every year
since 2008
03/04/2014 6
7. eurordis.org
Rare Disease Day
• National Alliances are the official
partners
• Thousands of events are held
around the world in over 80
countries
• The momentum contributes to the
advancement of national plans
and strategies for rare diseases
in a number of countries in the
EU and beyond.
03/04/2014 7
8. eurordis.org
Targets
• General Public (and the Media)
• Patients and patient representatives
• EU and national policy makers & Health authorities
• Health professionals and care givers
• Researchers, clinicians and academics
• Pharmaceutical and biotech industry
9. eurordis.org
Organisation- role of EURORDIS
• Dates, themes, content
• International coordination of Rare Disease Day
• Management of graphic identity (logo, poster, visuals)
• Rare Disease Day website
• Development of common tools
• European level event
• Management of “Friends of Rare Disease Day” list
• Evaluation of results at international level
• Media monitoring
03/04/2014 9
10. eurordis.org
• Coordination at national level
• Updating information on www.rarediseaseday.org
• Linking national/local partners to „Friends of Rare Disease Day‟
• Adaptation of common tools
• Funding for local actions
• Press/ Media contacts
• Data gathering for evaluation
• Organisation of common features:
• Patron: video or written support message
• Reaching out to researchers
10
Role of National Alliances
11. eurordis.org
Additional stakeholders are invited to participate in the event:
European Federations, EUROPLAN partners, Industry, Research Networks, Regulators
Participating organisations must:
- Contact their national alliance in their country
- Coordinate their activities with the national alliance in their country
- No written agreement but by completing on-line form to become a „Friends of
Rare Disease Day‟ they accept to:
- adhere to the spirit of the campaign (no commercial use of the logo! No
product advertising!)
- link to website(s) and post logo
- help raise awareness and relay the messages of the campaign
(Names of „Friends‟ will be displayed on website)
11
Other organisations
12. eurordis.org
Communication tools
• Info Pack
• Logo / banner / email footer
• Social media banners and logos
• Poster
• Slogan
• Website
• Press kit
• Official video
12
16. eurordis.org
Rare Disease Day: Participating Countries
18 in 2008
30 in 2009
46 in 2010
55 in 2011….
>80 in 2014
FSGA, January 21, 2012, Sydney, Australia